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Invisible symptoms: the unseen side of MS

Many MS symptoms seem invisible to other people. They may affect you greatly but no one seems to notice. This can be very frustrating and upsetting.

Jane from the MS Trust info team explores some of the reasons for this and suggests what you could do to raise awareness.

It can be surprising sometimes. You might be clinging onto your shopping trolley for support, experiencing dizziness and fatigue but no one seems to notice. Another time, your lip is set and your expression is grim but do they ask how your pain is today?

Many MS symptoms seem invisible to other people. They may affect you greatly but pass by everyone else. This can be very frustrating and upsetting.

So, why don’t people see some of the more visible signs of so-called invisible symptoms?

Why don’t people realise?

Could someone tell if you had one of these symptoms? And if not, why not? Here are a few possibilities:

They don’t know you have the symptom

People aren’t mind readers so perhaps we expect too much from them in figuring out what’s going on. Will they guess that a grim expression means that you are in pain rather than you burnt the dinner earlier on (or whatever they imagine has happened)? Will they realise that taking the last seat on the bus means that your fatigue is bad today rather than your shoes are killing you?

If they don’t know, is it reasonable to expect them to guess and guess correctly?

They don’t remember

Maybe you have already explained your MS symptoms but someone doesn’t ask you about them or remember that you can’t walk for very long, for example, when they are organising an outing. Why is this?

Many people are very wrapped up in their own lives and their own worries and don’t have head space for remembering anything more. It’s not that people don’t care, they just don’t get around to thinking about it.

They don’t notice

You may feel that your MS symptoms are really obvious. So-called invisible symptoms can be so bad that they show up on your face, especially if you are in pain. Surely if you are holding onto something for support it must be a dizzy day or a fatigue day or both….…..

It can be puzzling that others don’t notice something is wrong, even if they can’t realise the full extent of your difficulties. As before, it may be because people are in their own world and not looking outward enough to see what’s happening to you.

They don’t understand

Perhaps you’ve told them about your symptoms and they’ve remembered what you said. However, they don’t really understand how these symptoms affect you in everyday life.

It may be worth thinking back to when you were first learning about MS. Had you heard of spasticity? Could you explain nerve pain? These are quite difficult concepts to get to grips with. For most people, these things will be outside their personal experience and general knowledge so it will be a steep learning curve for them to understand what you are going through. You might need to explain several times or in different ways so that they appreciate your difficulties.

They put two and two together and get five!

People can be very quick to jump to conclusions. If you are wobbly on your feet and walking up the High Street after pub closing time they may assume you’ve had a bit too much alcohol. If it’s 10am, they may still assume the same thing. The chances are that they will not consider MS balance symptoms as a possibility.

You are doing a great job of hiding it

Many people with MS prefer to cover up how much symptoms are affecting them. Some worry that they shouldn’t make a fuss. Others find that invisible symptoms are easier to hide and this can be helpful if they don't want to disclose thier diagnosis to everyone.

Perhaps you are doing a better job of hiding your symptoms than you realised! Concealing the full effects of symptoms can be counterproductive if everyone assumes you are OK when you really aren’t. Would a bit more openness be better?

What could you do?

You could wear a T shirt that says “Can you see my invisible symptoms?” It might help!

On the other hand, you might like to:

Explain more about how MS affects you and emphasise that it includes invisible symptoms.

Add in gentle prompts and reminders like “You’ll remember that I can’t walk further than the High Street without a sit down, so can we stop at the bench on our way?”

Highlight when symptoms are playing up by being open about your limitations, for example, “I know I said I wanted to walk into town but my fatigue is really bad today. I’d like us to take the bus so I can use my energy for shopping once we get there.”

Try different ways of explaining your symptoms. Muscle stiffness may be an easier concept to understand than spasticity, for example.

Avoid hiding your symptoms so much. Being more open about the impact of your MS is not the same as making a fuss so perhaps some plain speaking will make a difference.

How can others help?

If you are the friend, family or colleague of someone with MS, you could make a difference by:

Being supportive. MS is a complex condition where different people experience different symptoms some of which may not be obvious to you.

Avoiding saying “But you look so well!” Many people find this hugely frustrating as they may look OK on the outside but they are feeling really ill on the inside.

Asking open questions such as “How are you today?” This allows someone with MS to choose from a whole range of possible answers from “really good” to “really struggling” and gives them the option to give some detail if they’d like to.

Asking if there is anything that you can do to help right now. You could follow it up by encouraging them to tell you when you can help in the future. It can be very reassuring to know that you can call on someone if needed.

Trying to learn about invisible symptoms so that you understand better.

Listening!

Accepting that invisible symptoms are very real to the person who is experiencing them.

MS is complex, life-long and unpredictable, without a known cause or cure. Our Information Team take away some of the uncertainty such a diagnosis can bring and help people living with MS to see a way forward.

They provide bespoke, practical, evidence-based information, receiving over 3,000 enquiries and sending out over 60,000 publications, researched and written by the team, every year.

The MS Trust receives no government funding and relies solely on the generosity of its supporters in order to continue to offer this lifeline for the 100,000 people living with MS in the UK. If you would like to support our Information team please donate now.